DESK REVIEWS | 04.02.01.06. How are people living with dementia and their care needs presented and represented in this context? Are families/carers involved in the development of the policies and plans?
DESK REVIEW | 04.02.01.06. How are people living with dementia and their care needs presented and represented in this context? Are families/carers involved in the development of the policies and plans?
Policies for older people and the law projects described above try to address some needs of people living with dementia. Regarding the participation of families/carers in the development of policies, it still does not seem to be a reality in Brazil. However, generally speaking, at times, documents under discussion are being made available for public consultation over a period of time. For example, families, carers, and patients were able to make a contribution through public consultation when the Alzheimer’s Disease Clinical Therapeutic Protocol was developed (Brazilian Ministry of Health, 2017c).
Brazilian Ministry of Health. (2017c). PCDT Alzheimer. Brazilian Ministry of Health.
There are no policies or plans to our knowledge that have currently been developed for dementia in India. However, during the development of the Dementia India Strategy document, ARDSI has involved persons living with dementia (ARDSI, 2018).
Alzheimer’s and Related Disorders Society of India. (2018). Dementia India Strategy Report. Alzheimer Disease International. Available from: https://ardsi.org/pdf/Dementia%20India%20Strategy%20Report%202018.pdf
There is no mention in national plan that people living with dementia were directly involved in its development. However, families/carers were represented during the development through non-governmental associations, Alzheimer’s Indonesia (ALZI), which was one of the actors involved in making the national strategic plans (Juliyah & Andry, 2016).
The second action step of this national strategy advocates the human rights of people with dementia and their caregivers. The key indicators to achieve this are protection of people with dementia through existing regulations such as those formulated by the Ministry of Home Affairs, advocacy efforts on human rights, formation of regional caregiver support groups, and realisation of health referral system for dementia (Ministry of Health Republic of Indonesia, 2015b).
Juliyah, & Andry, G. (2016). Strategi Nasional Penanggulangan Demensia dan Alzheimer Diluncurkan. Info Publik. http://infopublik.id/read/148368/strategi-nasional-penanggulangan-demensia-dan-alzheimer-diluncurkan-.html
Ministry of Health Republic of Indonesia. (2015b). National Strategy: Management of Alzheimer and Other Dementia Diseases: Towards Healthy and Productive Older Persons. Ministry of Health Republic of Indonesia.
NZ Dementia Framework:
“We would like to acknowledge the valuable input we received from people with dementia and their families and whānau and would like to thank Alzheimers Auckland for coordinating the group sessions for us.”
Dementia Action Plan:
“The consultation incorporated a broad range of stakeholders including people living with dementia and their care partners, … and a further 25 individuals provided feedback specifically on their experience with Cognitive Stimulation Therapy”.